Developmental Disabilities and Disorders OT 500 Spring 2016

Defining developmental disability  What’s in a name?  Is developmental disability a diagnosis?  What purposes do labels serve?

What’s in a name?  Definitions of developmental disability  Categorical  List of conditions (cerebral palsy, autism, intellectual disability (formally mental retardation), hearing loss, blindness, etc)  Functional  More descriptive and related more to functional impairments instead of diagnoses  Regarded by some as a less medical model  Used mostly for administrative purposes such as Eligibility for benefits  Federal law defines developmental disability as a severe, chronic disability of an individual age 5 or over that 1. Is attributable to a mental or physical impairment or a combination of mental and physical impairments 2. Is manifest before age Is likely to continue indefinitely

What’s in a name?  Intellectual disability involves significant limitations in  Intellectual functioning usually as measured by a standardized intelligence test and  Adaptive behavior usually as measured by a standardized adaptive behavior scale  Onset prior to age 18

What’s in a name?  Cerebral palsy  A non-progressive encephalopathy (brain abnormality) affecting motor functioning with onset before 12 months of age  Many sub-types depending on the part of the body affected (quadraplegic, hemiplegic, diplegic) and the type of motor impairment (athetoid, spastic, hypotonic, ataxic)  May be associated with other impairments – e.g. intellectual disability (50%), hearing loss, vision impairment

Defining Developmental Disability  Federal law defines developmental disability as a severe, chronic disability in someone >5 that results in substantial functional limitations in 3 or more of 7 areas of major life activity  Self-care, Mobility  Receptive and expressive language  Learning  Self-direction  Capacity for independent living and Economic self-sufficiency  A severe, chronic disability in someone >5 that reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated, except that such term, when applied to infants and young children means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.

What’s in a name?  Most states use variations of the federal definition to define eligibility for disability services  Neurodevelopmental disability does not have a statutory definition in federal or state law  Sub-category of developmental disability related to those disabilities involving impairments of the nervous system (brain or spinal cord)  In effect, this includes most developmental disabilities

What’s in a name?  Why did the federal government adopt a functional definition beginning around 1990?  For children under age five, the term “developmental delay” is often used in place of “developmental disability.” What purpose does this serve? Are there any risks to using this terminology?  What would be the implications of adopting and defining a term like “developmental exceptionalities” to replace “developmental disabilities”  What purposes do “labels” serve??

Is developmental disability a diagnosis?  Diagnosis is the process of identifying the cause of a person’s symptoms (complaints like cough, pain) and signs (physical findings like fever, rash, limp)  The various possible causes are called the differential diagnosis – e.g. for sore throat and fever = strep throat, mononucleosis, fungal infection, etc.  In many cases (more than 1/3), the underlying cause for a developmental disability is unknown  Developmental disability is more like a sign or a symptom – e.g. trouble walking, trouble talking, trouble solving problems  Even categorical types of developmental disability are more like signs and symptoms  Intellectual disability – there are many causes – e.g. Down syndrome  Cerebral palsy – there are many types and causes – e.g. intracranial hemorrhage (stroke) in a premature infant; congenital malformation, acquired brain injury, lack of oxygen during birth……  Most developmental disabilities have a cause that occurs in the prenatal period (before birth); although some have post-natal causes such as lead exposure, meningitis or encephalitis during infancy

AUTISM SPECTRUM DISORDERS (ASD) Diagnostic Concepts from the DSM-5 May 2013  Used the term “autism spectrum disorders”  Eliminated the term “pervasive developmental disorders” and the subtypes (including Asperger’s disorder and PDD-NOS)  Remains quite controversial

Autism Spectrum Disorders (adapted from DSM-5, p. 50) Main dimensions of symptomology 1. Persistent deficits in social communication and social interaction across contexts 2. Restricted, repetitive patterns of behavior, interests, or activities currently or by history, manifested by all 3 of the following:

Deficits in Social communication and social interaction  Problems with - social-emotional reciprocity including sharing of interests, emotions, and affect and response - non-verbal communicative behaviors used for social interaction such as poorly integrated verbal and nonverbal communication, abnormalities in eye contact and body- language, deficits in understanding and use of nonverbal communication; total lack of facial expression or gestures. - social approach and failure of normal back and forth conversation  Deficits in developing, maintaining and understanding relationships, appropriate to developmental level (beyond those with caregivers)  Lack of initiation of social interaction

Developing, Maintaining and Understanding Relationships (adapted from DSM-5, p. 50)  difficulties adjusting behavior to suit different social contexts  difficulties in sharing imaginative play and in making friends  apparent absence of interest in people

Restricted, repetitive patterns of behavior, interests, or activities manifested by at least two of the following:  Stereotyped or repetitive motor movements, use of objects, or speech  Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior  Highly restricted, fixated interests  Sensory differences

Stereotyped or Repetitive Behavior (adapted from DSM-5, p.50) Stereotyped or repetitive speech, motor movements, or use of objects  simple motor stereotypies  echolalia  repetitive use of objects  idiosyncratic phrases

Routines and Rituals (adapted from DSM-5, p.50) Insistence on sameness, excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change  motoric rituals  insistence on same route or food  repetitive questioning  extreme distress at small changes

Restricted Interests (adapted from DSM-5, p.50) Highly restricted, fixated interests that are abnormal in intensity or focus (and interfere with other aspects of development)  strong attachment to or preoccupation with unusual objects  excessively circumscribed or perseverative interests

Sensory Differences (adapted from DSM-5, p.50) Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment  apparent indifference to pain/heat/cold  adverse response to specific sounds or textures  excessive smelling or touching of objects  fascination with lights or spinning objects

Autism Spectrum Disorders (adapted from DSM 5, pp )  Symptoms must be present in early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies).  Symptoms together limit and impair everyday functioning.  Symptoms are not better explained by intellectual disability or global developmental delay.

A Few Examples of “Load”  Costs of treatment--the Autism Society of America (ASA) estimates that the life-time costs of care for one individual range from $3.2 to 5 million  Cost of lifetime care can be reduced by 2/3 with early identification and intervention  Only 12% of adults with ASD are fully employed80 reported change in work schedule  Parent report: (Sung, Bernard, & Collins, 2012; NH Statewide Needs Assessment) 67% reported stopping work outside of home 49% reported decreased work hours 46% reported changing type of work 37% reported staying in job because of health insurance 35% reported lost promotion/advancement opportunities

(Implicit) Pressures to Teach  Need for direct teaching of the “hidden curriculum”  The 25 to 30 hours per week, 12 months per year recommendation (National Research Council)  Expectations for carry-over of training (e.g., PECS or behavior support plans)  Expectations for engagement

Service Delivery Systems  IDEA PART C Early Intervention Programs (birth-3); additional funds in NH through the Autism Proposal  Private Clinics: Behavior and play therapies, speech/language, occupational and physical therapy services  IDEA Part B Preschool, and School-aged services (3-12 years of age)  Specialized schools and Program